Personal Story
Alison
I am 62 years old, I have 3 children and I live in Derbyshire. I was diagnosed with Pernicious Anaemia 32 years ago. This is my story.
In 1988 I had my first symptoms, numbness and tingling in my hands and feet. I saw my GP, who told me I was depressed. With each new symptom, I would see my GP only to be told the same thing, I was depressed. My symptoms were alarming ! Tingling/numbness all over, feelings of pressure, tightness, unusual skin sensations, electric shock type pain, muscle twitches, poor balance and fatigue. My body no longer felt like my own.
My reading material became medical dictionaries, I was convinced I had MS and I was terrified.
Eventually I was referred to a neurologist, examined thoroughly and given an EEG. All my results were normal. My family were reassured but I wasn’t. I knew how I felt and I felt awful.
In 1993, pregnant with my second child, I was referred to an endocrinologist. I credit this doctor with saving my life; he listened. He explained that he thought I had PA. I had blood tests that confirmed this. There is no history of PA in my family. My treatment would be B12 injections 3 times a week for 2 weeks, then every 3 months for the rest of my life. I would have my B12 levels tested yearly. I would now be under the care of the GP. I suppose I thought that was it, I would feel better and I did. A lot of my symptoms faded or went, but I never felt the same. I had 3 children, was working and I had little time to think about my health. Over time I began to experience severe fatigue. I saw my GP (which was never the same one). I asked if I could have my injections every 2 months and she agreed without hesitation. My fatigue improved considerably. Since that time, the GP surgery has questioned why I needed B12 every 2 months instead of the standard every 3 months. I explained how I felt. They agreed I could continue, but made it clear they were not happy.
Since then, and because I still had vague symptoms I began to read about PA and I learnt a lot. Then I joined PAS and learnt a lot more. I found out that symptoms can come back. I also learnt about peripheral neuropathy, which I have been diagnosed with. I have burning sensations in my legs, reduced sensation in my feet, poor balance and brain fog. (I also have Fibromyalgia along side this). As I get older I am more aware of my symptoms and I worry that I am not getting adequate B12. Because I was undiagnosed for so long I believe I have nerve damage, I can feel it. The most important thing I learnt was about the inaccuracy of the standard B12 blood test and the tests that patients should be offered to give a truer picture of how much B12 they actually require to stay well. Armed with this information I made a GP appointment. I explained how I felt and my concerns. I showed the GP a screen shot of the PAS article that stated what the tests were and why they were needed. She laughed, and said “We don’t do these, your levels are fine”. I felt humiliated, without reassurance, I received no kind words, just ignorance.
I know my experience is not an isolated one. All of us who suffer from PA know this is a disease that the medical profession doesn’t understand.
With the help of the PAS it feels like change can happen.
I want to end my story on a positive note. Although living with PA is difficult, I do feel it has made me stronger, because each day, no matter how awful I feel I get up and live my life as best I can. I talk about PA and do everything I can to make myself feel better. I try to eat a healthy diet (I also use an oral B12 spray) and do a lot of walking, but sometimes it feels like I have a mountain to climb. PA receives little attention or understanding and that is hard because we all matter. The PAS is working so hard to change that, it feels like now we have a voice. Knowing there are so many people out there who feel like me makes me feel that I have not been forgotten and people do care.
Thank you.